“The fact that it is accessed and not copied or shared is super important to me.” (Female, 41+, ABC1, England]
“Normal everyday people don’t need this information; this is too much. The researchers might care, but we don’t care.” [Digitally excluded, England]
"I don't think we need to know specifically whether it is stored in one place or lots of places. It is accessed securely on some sort of system anyway, the difference doesn't matter to me." [Male, 18-40, C2DE, Scotland]
“I like the word ‘highly secure’ that sounds very reassuring.” [Female, 41+, ABC1, England]
“When you start giving too much detail like this it brings in more questions for me. It sounds like my data is going to lots of places now and is being spread out.” [Mixed gender, 35-54, C1C2, England]
Earlier this year, we published the rapid evidence review from the first stage of our What Words To Use project, which aims to:
- Gain insight into members of the public’s understanding of Trusted Research Environments (TREs), Secure Data Environments (SDEs) and similar concepts
- Consider members of the public’s feelings and attitudes towards these topics
- Co-develop specifications for public-facing resources based on the above - this includes the content, tone and medium
We are pleased to now publish the full report, stimulus materials and discussion guides from the project here.
In total 16 workshops were conducted with 50 members of the public from across the UK (including a mixture of gender, ethnicity, age, disability, socioeconomic status and those who are digitally excluded), alongside 8 interviews with experts in the use of health data.
Key findings included:
- Generally, members of the public are supportive of the move to using TREs and SDEs.
- There are six core topics that public participants want included in any resource describing SDEs or TREs: why data is used for purposes other than direct care; the fact that data is de-identified prior to access; data in SDEs and TREs is accessed not shared; a transparent description of who is accessing the data; how the data is kept secure; and he benefits of using SDEs and TREs.
- An SDE/TRE resource should contain layers of detail to meet the different information needs of the public - a 1-line summary, a main resource containing the core messages above in an animation form, and links to further detail for those who seek it.
- Many participants did not want significant amounts of information in a resource. However, they did want the ability to find further information if needed.
Limitations and difficulties:
- There isn’t yet a common, agreed definition for TREs and SDEs, nor 100% acceptance that they are the same thing or different things, particularly in terms of public communication.
- There is a breadth of technical differences and definitions between individual SDEs and TREs that make high level generalisations difficult.
- An evolving and changing policy landscape means resources will likely need to evolve with it over time.
- The balance between transparency and clarity is difficult, particularly when it comes to the detail of what’s meant by pseudonymisation/de-identified data
- Public participants often wanted to be reassured, but this isn’t UPD’s role. Reassurance should be provided by individual TRE and SDE providers.
Public participants co-created a script and storyboard for the main resource, which we will now work with a creative agency to produce as an animation.
We appreciate all the efforts of Research Works for undertaking this project, the public participants who gave their time and co-created the outputs, the expert contributors for their time and insight, and our project steering group for supporting us in shaping this project and providing feedback.
If you would like to discuss this project further or have any questions, please email us at hello@understandingpatientdata.org.uk